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Would You Consider This A Positive Celiac Result?

todzwife

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todzwife Rookie
todzwife
Posted

I didn't do the gene panel, but I am pretty sure I should have. Here is what we DID do...

Fecal Antigliadin IgA 59 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 36 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 1436 Units (Normal Range <300 Units)

I was really surprised how high the fecal fat score was (and more than a little worried)...

Should I take her for more testing?

FWIW, in December her RAST test showed an IGG of 112 for wheat (normal being under 15).

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happygirl Collaborator
happygirl
Posted

Enterolab cannot and does not diagnose Celiac. It can only indicate gluten intolerance (although the person may have Celiac).

You may want to consider having the Celiac blood panel done, and the endoscopy (not only to look for Celiac, but for other disorders). Your doctor can also order the gene test.

Ursa Major Collaborator
Ursa Major
Posted

Those results are high. How old is your daughter? If she is under six the chance of blood work and endoscopy being a false negative are high.

It doesn't really matter if it is officially celiac disease or gluten intolerance. Your daughter is obviously at least gluten intolerant, and has definitely quite severe malabsorption.

If it was my kid, I'd put her on the gluten-free diet immediately.

Rachel--24 Collaborator
Rachel--24
Posted

I would request the Celiac panel, endoscopy and possibly genetic testing as well....as Happygirl mentioned.

If you're looking for an official diagnosis that would be the best way to go....however, there is always a possibility of false negatives...particularly with the biopsy.

Once you have these tests completed you can start her on the diet and see if there is improvement.

Many people choose to go ahead with the diet without any additional testing. If it were my daughter I'd have the testing done asap and then put her on the diet.

Once you start the diet the tests are not accurate...if you choose to have them done later she would have to get back on gluten for several weeks prior to testing.

I tested negative for Celiac and positive through Enterolab. I also had a high malabsorption score but no Celiac gene. The diet did not resolve my symptoms and I had to continue searching. For me it was helpful that I'd already had the bloodtests and endoscopy to rule out Celiac as well as other conditions.

I do have an intolerance to gluten as well as many other foods but I do not have Celiac Disease.

holiday16 Enthusiast
holiday16
Posted

My son had a similar fecal fat score. His was 1254. I can tell you our experience with pursuing more testing. He has a heart defect so at his cardio. appt. I mentioned it to his ped. cardiologist and he was very concerned. We had been seeing a decline in his energy, but had assumed it was heart related. He had a stress test done and his heart was def. not the problem. My son had already had the blood test through my family Dr., but it was not the complete panel. What he did have done came back negative.

We saw a ped. GI who ordered several tests including a gene test. The gene test from prometheus came back showing he's 16X more likely than the general population to have celiac disease. Based on that he did a scope which showed severe damage from reflux. He took two samples in places that looked probably for celiac to have analyzed and I'm not sure what exactly the testing was they did, but we were told the GI Dr. ordered something more in depth to make sure there were no mistakes. I think he only took two samples because he was concerned about bleeding related to his med.

Both samples came back negative for celiac, but the GI Dr. has him on a 3 month gluten free trial to be followed by a gluten challenge. Two weeks on the diet we're already seeing improvement so it's pretty obvious he needs to be gluten-free. He has much more energy and many of the issues with fatigue that were concerning are improving.

Our family Dr. even suggested we try the diet and see if we noticed an improvement, but in his case with his heart defect I really wanted to push for more. I want to make sure he has all the followup bloodwork etc. that he needs. It's worked out well for us because I was able to find out from this Dr. more information about what tests the rest of us need being gluten-free and dh is going to have the blood test for celiac. So far he's the only holdout :o) My oldest was diagnosed by Enterolab, but negative bloodwork. Mine was Enterolab, but negative bloodwork and my youngest was diagnosed on response alone. Diet really is the best test even if everything else comes back negative.

todzwife Rookie
todzwife
Posted
  • Author

Thank you. She's only 2 and had some pretty severe allergies (including wheat, eggs, peanuts and soy) and although she was wheat free she didn't have complete relief from her symptoms. So I chose to do enterolab because of her age. She was 90% gluten free during about a 3 month time, but ended up eating some graham crackers and had a MASSIVE meltdown for a few days. I'm considering getting her tested for actual celiac but really the treatment is the same...

I'm just worried about the fecal fat score. It's SO high.

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